Rare Disease Day

The International Foundation for CDKL5 Research will be participating in the 9th annual observance of Rare Disease Day in the U.S. on February 28, 2018.

“Research”

The Rare Disease Day 2018 global theme, ‘Research.’ brings hope to people living with a rare disease. “With research, the possibilities are endless!”

There are nearly 7,000 rare diseases and disorders thataffect nearly 30 million Americans. Almost 1 in 10 Americans are suffering from a rare disease and more than half are children.

According to www.rarediseaseday.us, in the U.S., a rare disease is classified as a disease that affects fewer than 200,000 people. This definition comes from the Orphan Drug Act of 1983. This definition varies slightly from the definition of a rare disease in Europe.

Along with dealing with specific medical problems, people with a rare disease struggle to get a proper diagnosis, find information, and get treatment. Because the conditions of the disease are so rare, medical research is often underfunded.

The IFCR is excited to be a part of Rare Disease Day 2018 and a member of NORD (National Organization for Rare Disorders).

Get Involved – Here you will find suggested activities, in-school activities, Handprints Across America, press kit, and other resources